Flash Says…

Archive for November 2010

Every week a lovely lady comes to my house, relieves me of two purple notes, and spends an hour talking me through physical exercises which must look bizarre to passers by.

For months I have wanted to improve my fitness, but I needed someone who would be able to understand my joint hypermobility and co-ordination issues. I have Ehlers-Danlos Syndrome which causes all kinds of problems, but mainly means that my joints are too bendy (some people think of it as being “double jointed”), my knees dislocate easily, and I have a lot of pain. I am naturally limited in many ways (for example, how far I can walk) but also have to be careful, even within my limitations, not to do myself damage or aggrevate the pain. Naturally, this makes it very difficult for me to get moving or tone up.

I wasn’t sure about Pilates to begin with. I’d read that it was the only form of exercise that “people like me” can do safely, so I asked my physiotherapist about it and she dismissively said that there was no point; basic Pilates would be similar to the kind of homework she was setting for me anyway. But when the physio department discharged me, I was left without guidance, and no way to exercise. Being overweight, and knowing I was quite unfit, this was something I wanted to tackle. Yet in my mind I associated Pilates with Yoga and other hippy type, faddish things. I had visions of people pretending to be a tree. Google didn’t reassure, informing me that the exercises had names such as “The Clam”, and that I’d have to do some kind of special breathing so that everything came from my “core”. Still, it seemed the only option available to me, so I spotted an advert in a nearby Vegan cafe, and made the call – to a friendly lady called Alison Bray.

The first thing my new tutor did was talk to me, learn about my impairment, and borrow my hypermobility for physios book. So she really wanted to help, rather than just take my money. She listened and learned. That was a good start.

Alison is slowly guiding me through exercises, and I’m enjoying the work. It’s much more cerebral than aerobics or going jogging – I’m having to remember how to breathe, and consider exactly which muscles to move, in a series of precise actions. I focus on relaxing my body and only engaging the few parts that are necessary for each movement. At first I found this hard – so many parts of my body wanted to join in! But now I’m getting familiar with muscles I hadn’t even realised existed.

Each week I mention any joints that are playing up, and we carefully work around them, but there are physical benefits for my condition too. For example, I usually wake up with pain across my lower back. Yet if I lie on the floor and run through a few pelvic lifts and some pelvic curls, it’s not long before I feel scrunching in that area – and then the pain is relieved as my bones move into the correct alignment. I know that the problem will return the next night – but at least I now have a way of shaking it out of myself.

The special Pilates way of breathing wasn’t so strange after all – given that I used to play trumpet I am aware of different breathing techniques, and I am reasonably strong around the middle since I have always enjoyed sit-ups. Once I understood what was necessary – how to harness the muscles in my centre so that they can stabilise me for other movements – everything made sense.

Unexpectedly, the most important part for me has been in training not my muscles but my brain. For example, I was asked to undertake an exercise where I moved my arms back, as if pushing on an invisible wall. The object of the exercise was not to work my arms, but my lats. Initially I thought “oh, that’s odd, I can feel something moving in my back!” Yet today when I was given a similar but harder exercise, I was able to relax my arms and to consciously tell my lat muscles that they were the part that had to move. And it worked. Two months ago, I’d never heard of a “lat”!

One of the symptoms of my condition is poor proprioception; if I was to try and run, I’d lollop around like a drunken elephant, and do myself damage in the process. But through Pilates, I am learning to instruct my muscle groups more specifically, and consciously, and to have better physical self-awareness. I think in the long run this is going to be very valuable. My brain is laying down pathways every time I repeat a movement. Slowly, I am taking control of my body.

It doesn’t matter how many aches and pains I feel before my tutor arrives, I always feel better after she’s been. Pilates is a calm, precise form of exercise and it seems to stabilise my joints without pushing things too far, and to work my muscles without overtiring them. Even better, time with Alison is an hour spent away from my computer, using my brain in another way so I can forget the world outside.

Pilates turns out not to be a hippy thing at all, but a wonderful way of harnessing your mind and body. If you’re looking for a safe, cerebral way to exercise, just find a tutor and give it a try. Pilates is changing me for the better, and I’d recommend it to anyone.

[Crossposted to Where's The Benefit where I am one of the team.]

While massive spending cuts hit us all, my council – Waltham Forest – has taken the step of asking its residents where they should make savings. A friendly green website presented me with 8 different categories such as “children’s services” and “your streets” and invited me to make cuts of £55m. Suddenly I realised the mammoth scale of this undertaking – the way that no facilities or services can escape unscathed. However, I gave myself the challenge of maintaining adult social care at its current rate.

Don’t get me wrong; I don’t think adult social care is currently even adequate in my borough. I have been told that if someone can manage to give themself a flannel-bath, then they are not entitled to any kind of care. Of course this doesn’t take account of any inability to cook safely, nor to take out the rubbish or manage laundry! But simply trying to juggle cuts while keeping rates of social care at their current level made me aware of the huge task that councils are facing.

Each topic came with a slider – I simply had to pick categories and drag them to save money, and the website would let me know the impact of my actions. For example as I removed all funding from “Sport & Leisure” I was informed that the impact would be “reduced support to voluntary sector sports clubs, reduced sports activities in parks and estates and reduced sports activities and participation in competitions and events”. While any cutback is a shame, I don’t feel guilty in removing sports activities when compared to helping disabled people to eat, be clean and maintain independence.

However, although there are eight categories and sliders to adjust, it is instantly clear that some categories will have little impact in making the £55m of required savings. After all, the total budget for Housing & Homelessness is just £4.85m. For Culture, Learning & Community Libraries the budget is £6.91m. In fact, if I set 6 of the 8 sliders to zero – removing all funding in those categories whatsoever – I still need to save another £28m. This money can only come from Children’s Services & Education, or the Adult Social Care that I am fighting to protect. In fact if I maintain adult care at its current level, the system shows me that I have no choice but to cut Children’s Services by more than 25%, removing several social workers and forcing large numbers of at-risk children to stay in their home rather than go into care – something which the real world would not tolerate. My changes would even impose the removal of care packages for disabled children; it seems that whichever way I go, with the huge quantity of cuts required, there will be a direct impact on disabled people one way or another.

Because adult social care comprises such a very large proportion of a council’s expenditure, it’s natural that many people will think that this is an obvious way to make savings. And although any such cutback is abhorrent to my mind, it may be essential in order for our councils to stay solvent. I am pleasantly surprised that although adult social care draws so much money, respondents to Waltham Forest’s website have only voted for a 7% reduction in our services. “Only” 7%. If the council implement cutbacks based on this consultation, they will “only” …increase charges for their services (when many service users may be on benefits and unable to contribute financially for their care) …reduce programmes to support vulnerable people and their carers …and make staffing cuts so there will be even longer delays for assessments than there are at the moment.

Wow. Yet when I play with the figures myself, I can see that this may be a lucky escape – no matter how bad it seems, things can always be worse!

Unfortunately, in the three weeks that this website has been running, only 733 people have responded. That’s a quarter of 1% of everyone who lives in the area. How disappointing, that we are offered this opportunity to have our say and shape service provision for the future, and yet barely anyone bothers? It’s not for want of publicity, as a flyer went out with “Waltham Forest News”, a council newspaper delivered to every household in the borough.

I am utterly opposed to cuts of services and benefits which help disabled and older people to remain independent. I am increasingly concerned about these “stealth” cuts made by boroughs, where there is no right of appeal. But even I must admit that I can’t see what the solution is, other than to hope the economy recovers quickly, and that disabled people are the first to have their services reinstated when more funds are available.

In the meantime, I fear hearing about the human side of these cuts. I already see case studies in the local paper, I know people who are struggling, and situations where older or disabled neighbours have to provide food for one another. I know this is already happening on my own doorstep and I am dreading the situation getting worse. It seems the councils are between a rock and a hard place. All we can do is tell them to cut anything, everything, but adult social care.


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